631
Views
1
CrossRef citations to date
0
Altmetric
Research Articles

Family-centred service in paediatric acquired brain injury rehabilitation: perspectives of children and adolescents and their families

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 3087-3098 | Received 30 Jan 2022, Accepted 02 Sep 2022, Published online: 15 Sep 2022

References

  • McKinlay A, Linden M, DePompei R, et al. Service provision for children and young people with acquired brain injury: Practice recommendations. Brain Inj [Internet]. 2016;30(13-14):1656–1664.
  • Araki T, Yokota H, Morita A. Pediatric traumatic brain injury: Characteristic features, diagnosis, and management. Neurol Med Chir (Tokyo). 2017;57(2):82–93.
  • Bruns J, Hauser WA. The epidemiology of traumatic brain injury: a review. Epilepsia. 2003;44(s10):2–10.
  • Bedell G. Functional outcomes of school-age children with acquired brain injuries at discharge from inpatient rehabilitation. Brain Inj. 2008;22(4):313–324.
  • Limond J, Dorris L, McMillan T. Quality of life in children with acquired brain injury: parent perspectives 1-5 years after injury. Brain Inj. 2009;23(7):617–622.
  • Ewing-Cobbs L, Barnes M, Fletcher J, et al. Modeling of longitudinal academic achievement scores after pediatric traumatic brain injury. Dev Neuropsychol. 2004;25(1-2):107–133.
  • Koskiniemi M, Kyykkä T, Nybo T, et al. Long-term outcome after severe brain injury in preschoolers is worse than expected. Arch Pediatr Adolesc Med. 1995;149(3):249–254.
  • Taylor H, Alden J. Age-related differences in outcomes following childhood brain insults: an introduction and overview. J Int Neuropsychol Soc. 1997;3(6):555–567.
  • Anderson V, Catroppa C, Morse S, et al. Functional plasticity or vulnerability after early brain injury? Pediatrics. 2005;116(6):1374–1382.
  • Benz B, Ritz A, Kiesow S. Influence of age-related factors on long-term outcome after traumatic brain injury (TBI) in children: a review of recent literature and some preliminary findings. Restor Neurol Neurosci. 1999;14(2-3):135–141.
  • Cronin AF. Traumatic brain injury in children: issues in community function. Am J Occup Ther. 2001;55(4):377–384.
  • Slomine BS, McCarthy ML, Ding R, the CHAT Study Group, et al. Health care utilization and needs after pediatric traumatic brain injury. Pediatrics. 2006;117(4):e663–e674.
  • Greenspan A, MacKenzie E. Use and need for post-acute services following paediatric head injury. Brain Inj. 2000;14(5):417–429.
  • Aukema EJ, Last BF, Schouten-Van Meeteren AYN, et al. Explorative study on the aftercare of pediatric brain tumor survivors: a parents’ perspective. Support Care Cancer. 2011;19(10):1637–1646.
  • Manning JC, Hemingway P, Redsell SA. Survived so what? Identifying priorities for research with children and families post-paediatric intensive care unit. Nurs Crit Care. 2018;23(2):68–74.
  • Gan C, Schuller R. Family system outcome following acquired brain injury: Clinical and research perspectives. Brain Inj. 2002;16(4):311–322.
  • Bursnall S, Kendall E, Degeneffe CE. Regaining equilibrium: Understanding the process of sibling adjustment to pediatric acquired brain injury. Rehabil Psychol. 2018;63(3):447–459.
  • Kirk S, Fallon D, Fraser C, et al. Supporting parents following childhood traumatic brain injury: a qualitative study to examine information and emotional support needs across key care transitions. Child Care Health Dev. 2014;41(2):303–313.
  • Wagner M, Stenger K. Acute brain injury: a guide for family and friends. Iowa: University of Iowa Health Care, University Hospital School; 2000.
  • Wade S, Taylor H, Drotar D, et al. A prospective study of long-term caregiver and family adaptation following brain injury in children. J Head Trauma Rehabil. 2002;17(2):96–111.
  • Wade S, Taylor H, Drotar D, et al. Childhood traumatic brain injury: initial impact on the family. J Learn Disabil. 1996;29(6):652–661.
  • Hickey L, Anderson V, Jordan B. Family forward: Promoting family adaptation following pediatric acquired brain injury. J Soc Work Disabil Rehabil. 2016;15(3-4):179–200.
  • Micklewright JL, King TZ, O'Toole K, et al. Parental distress, parenting practices, and child adaptive outcomes following traumatic brain injury. J Int Neuropsychol Soc. 2012;18(2):343–350.
  • Wade S, Taylor H, Yeates K, et al. Long-term parental and family adaptation following pediatric brain injury. J Pediatr Psychol. 2006;31(10):1072–1083.
  • Robson T, Ziviani J, Spina S. Personal experiences of families of children with a traumatic brain injury in the transition from hospital to home. Brain Impair [Internet]. 2005;6:45–55.
  • Clark-Wilson J, Holloway M. Family experience of brain injury: Surviving, coping, adjusting. London: Routledge; 2020.
  • Gill D, Wells D. Forever different: Experiences of living with a sibling who has a traumatic brain injury. Rehabil Nurs. 2000;25(2):48–53.
  • Analytis P. The sibling relationship after acquired brain injury: Family dynamics across the lifespan. London: Routledge; 2021.
  • Guerriere D, McKeever P. Mothering children who survive brain injuries: playing the hand you’re dealt. J Soc Pediatr Nurs. 1997;2(3):105–115.
  • Bragg R, Brown R, Berninger V. The impact of congenital and acquired disabilities on the family system: Implications for school counseling. Sch Couns. 1992;39:292–299.
  • Taylor H. Research on outcomes of pediatric traumatic brain injury: Current advances and future directions. Dev Neuropsychol. 2004;25(1-2):199–225.
  • Rivara JB, Jaffe KM, Polissar NL, et al. Family functioning and children’s academic performance and behavior problems in the year following traumatic brain injury. Arch Phys Med Rehabil. 1994;75(4):369–379.
  • Anderson V, Gomes A, Greenham M, et al. Social competence following pediatric stroke: contributions of brain insult and family environment. Soc Neurosci. 2014;9(5):471–483.
  • Anderson V, Darling S, Mackay M, et al. Cognitive resilience following paediatric stroke: biological and environmental predictors: Resilience following paediatric stroke. Eur J Paediatr Neurol. 2020;25:52–58.
  • Taylor H, Yeates K, Wade S, et al. Bidirectional child-family influences on outcomes of traumatic brain injury in children. J Int Neuropsychol Soc. 2001;7(6):755–767.
  • Catroppa C, Anderson V. Traumatic brain injury in childhood: rehabilitation considerations. Dev Neurorehabil. 2009;12(1):53–61.
  • Wilson B, Gracey F, Evans JJ, et al. Neuropsychological rehabilitation: theory, models, therapy, and outcome. United Kingdom: Cambridge University Press; 2009.
  • Institute for Patient- and Family-Centered Care. What is Patient- and Family-Centered Care? http://www.ipfcc.org/about/pfcc.html
  • Law M, Rosenbaum P, King G, et al. What is family-centred service [fact sheet]. ON (Canada): CanChild; 2003. https://canchild.ca/system/tenon/assets/attachments/000/003/749/original/FCS_Sheet_1.pdf
  • Rosenbaum P, King S, Law M, et al. Family-Centred service: a conceptual framework and research review. Phys & Occupational Therapy in Pediatrics. 1998;18(1):1–20.
  • Bowen M. The use of family theory in clinical practice. Compr Psychiatry. 1966;7(5):345–374.
  • Bowen M. Family therapy in clinical practice. New York: Jason Aronson, Inc; 1978.
  • Kerr M, Bowen M. Family evaluation: an approach based on bowen theory. New York: Norton; 1988.
  • Maitz EA, Sachs PR. Treating families of individuals with traumatic brain injury from a family systems perspective. J Head Trauma Rehabil. 1995;10:1–11.
  • Kuo DZ, Houtrow AJ, Arango P, et al. Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J. 2012;16(2):297–305.
  • Kokorelias KM, Gignac MAM, Naglie G, et al. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res. 2019;19(1):11.
  • Uniacke S, Browne TK, Shields L. How should we understand family-centred care? J Child Health Care. 2018;22(3):460–469.
  • Botchway E, Knight S, Muscara F, et al. Rehabilitation models of care for children and youth living with traumatic brain and/or spinal cord injuries: a focus on family-centred care, psychosocial wellbeing, and transitions. Neuropsychol Rehabil. 2020; Available from: https://www.tandfonline.com/action/journalInformation?journalCode=pnrh20
  • King G, Williams L, Hahn Goldberg S. Family-oriented services in pediatric rehabilitation: a scoping review and framework to promote parent and family wellness. Child Care Health Dev. 2017;43(3):334–347.
  • Keetley R, Radford K, Manning JC. A scoping review of the needs of children and young people with acquired brain injuries and their families. Brain Inj. 2019;33(9):1117–1128.
  • Jones S, Davis N, Tyson SF. A scoping review of the needs of children and other family members after a child’s traumatic injury. Clin Rehabil. 2018;32(4):501–511.
  • Liamputtong P. Qualitative research methods. 5th ed. Australia: Oxford University Press; 2020.
  • Charmaz K. Constructing grounded theory. 2nd Ed. Los Angeles: Sage; 2014.
  • Charmaz K. Constructing grounded theory: a practical guide through qualitative analysis. 6th ed. London: Sage Publications; 2006.
  • Corbin J, Strauss A. Basics of qualitative research: techniques and procedures for developing grounded theory. 4th ed. Thousand Oaks (CA): Sage; 2015.
  • Archibald MM, Ambagtsheer RC, Casey MG, et al. Using zoom videoconferencing for qualitative data collection: Perceptions and experiences of researchers and participants. Int J Qual Methods. 2019;18:1–8.
  • Shelton TL, Jeppson ES, Johnson BH. Family-centred care for children with special health care needs. Washington (DC): Association for the Care of Children’s Health; 1987.
  • Glaser B, Strauss A. The discovery of grounded theory: strategies for qualitative research. Chicago: Aldine Publishing Company; 1967.
  • Charmaz K, Thornberg R. The pursuit of quality in grounded theory. Qual Res Psychol. 2021;18(3):305–327.
  • Simmons-Mackie N, Kovarsky D. Engagement in clinical interaction: an introduction. Semin Speech Lang. 2009;30(1):5–10.
  • Bright F, Kayes N, Worrall L, et al. A conceptual review of engagement in healthcare and rehabilitation. Disabil Rehabil [Internet]. 2014;37:643–654.
  • Phoenix M, Jack S, Rosenbaum P, et al. A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness. Disabil Rehabil. 2020;42(15):2151–2160.
  • Brewer K, Pollock N, Wright F. Addressing the challenges of collaborative goal setting with children and their families. Phys Occup Ther Pediatr. 2014;34(2):138–152.
  • Park E, Cho I. Shared decision-making in the paediatric field: a literature review and concept analysis. Scand J Caring Sci. 2018;32(2):478–489.
  • Kazak AE, Kassam-Adams N, Schneider S, et al. An integrative model of pediatric medical traumatic stress. J Pediatr Psychol. 2006;31(4):343–355.
  • Littell J, Alexander L, Reynolds W. Client participation: central and underinvestigated elements of intervention. Soc Serv Rev. 2001;75(1):1–28.
  • Staudt M. Treatment engagement with caregivers of at-risk children: gaps in research and conceptualization. J Child Fam Stud. 2007;16(2):183–196.
  • Phoenix M, Jack S, Rosenbaum P, et al. Parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 1. Contextualizing the journey to child health and happiness. Disabil Rehabil. 2020;42(15):2141–2150.
  • Sambuco M, Brookes N, Lah S. Paediatric traumatic brain injury: a review of siblings’ outcome. Brain Inj. 2008;22(1):7–17.
  • Smith J, Shields L, Neill S, et al. Losing the child’s voice and “the captive mother”: an inevitable legacy of family-centred care? Evid Based Nurs. 2017;20(3):67–69.
  • Jenkin T, Anderson V, D’Cruz K, et al. Engaging children and adolescents with acquired brain injury and their families in goal setting: the clinician perspective. Neuropsychol Rehabil. 2020;32(1):104–130.
  • Bamm E, Rosenbaum P. Family-centered theory: Origins, development, barriers, and supports to implementation in rehabilitation medicine. Arch Phys Med Rehabil. 2008;89(8):1618–1624.
  • Gan C, Wright F. Development of the family needs questionnaire - pediatric version [FNQ-P] - phase I. Brain Inj. 2019;33(5):623–632.
  • Miller I, Bishop D, Epstein N, et al. The McMaster family assessment device: Reliability and validity. J Marital Fam Ther. 1985;11(4):345–356.
  • Shields L, King S. Qualitative analysis of the care of children in hospital in four countries-part 2. J Pediatr Nurs. 2001;16(3):206–213.

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.